It’s been a couple of weeks since I’ve gotten my diagnosis and it’s still surreal to me.
I have a condition called Langerhan’s cell histiocytosis, which is classified as both a rare blood cancer and an autoimmune disorder. What makes my case exceptionally rare is the fact that it has developed in my brain and at my age (I’m 37).
The good news is that it’s treatable and I start radiation therapy in the new year. It may move to chemotherapy but for now, radiation therapy is the first port of call. It will be a very low dose so risk of hair loss and teeth is low.
I’m determined to “beat” this condition but I won’t pretend that the increasing and constant fatigue I’ve been experiencing for the last few months hasn’t been demoralising.